5 replies to this topic

[Nezzy]

Hi All! You can call me Nezzy I am a 28 year old female who lives in upstate NY with 3 kids 3 dogs and a husband. Here is my story sorry for the length

So a little over a year ago I started having what I called visions of random bugs and stuff in my room right before falling asleep. It happened about once a week or so and I really just thought nothing of it until about 6 months ago when they started happening every night and progressed into really frightening full blown hallucinations that made me jump out of bed and run out into the hall. So my first course of action was to talk to my cousin who is a therapist and she told me to start by mentioning it to my primary care Dr. Well he had no clue what I was having and diagnosed me with nightmares and tried to get me into a sleep study but it was a long hard road because my insurance wont cover sleep studies unless medically necessary and since his only diagnosis was nightmares they denied me 2 times. Finally I told him to put down that my father has sleep apnea and my husband said I snore and stop breathing when I sleep and that got me approved and by the next week I had my intial appointment with the sleep specialist. He also prescribed me ambien in the mean time until I could get some answers...the ambien always works against my hallucinations but I did not want to get addicted so I only took it on nights where I needed to sleep well.

After I told her everything that I was experiencing she told me they want to test me for narcolepsy and I was so confused. I told her that I think I would know if I fell asleep in the middle of daily activities or passed out when I was driving or something. She explained to me that those are really the made for tv versions of narcolepsy and the major symptom is EDS which I have but I have always shrugged it off as being a busy mom, and when I mentioned it to other people they said life is hard and everyone is tired so I should just deal. So she sent me home with a pamphlet and a appointment for the 2 sleep tests. While researching N I realized I could think back to a time where I have felt week when I get really mad or when I laugh to hard also I always zone out in certain situations but I am not sure if that has anything to do with it.

Anyways the sleep study came and went (on my birthday I might add) and I ran out of ambien but I didn't ask for anymore now that I might be getting some answers. So friday was my results appointment and she said that even though my polysomny was normal (I slept really well that night basically) my MSLT was very telling. She said I fells asleep during every nap with in 4 minutes and even entered REM sleep on the last nap with in 6 minutes. Here is the excerpt from the paper result paper I received:

"Ms. "Nezzy's" daytime MSLT demostrated a moderate to severe degree of hypersomnia with a mean sleep onset of 5.4 minutes. She fell asleep quickly during all five nap sessions and progressed into REM sleep during on of the naps (#5) Her nocturnal study was normal, with a total sleep time of 6.5 hours. This degree of hypersomnia and a nap containing REM intrusion should raise the diagnostic suspicion of narcolepsy, especially in a patient with prominent hypnagogic hallucinations reported in her clinical history. "

So Ok I finally have some answers but now I am overwhelmed with all of the treatments I might have to endure until I find the ones that work for me. I can't take novigal (sp?) because of the birth control I am on so she started me on a low form of Ritalin controlled release. She also gave me some information on Xyrem and told me to call her if it seems like something I might want to try for the "sleep" part. Reading all of these boards have gotten me worried about all the medications I might to be on to live a normal life and I am worried about side effects and addictions.

So there is my story. Reassurance from someone who has had this for awhile would be nice but I really just want to chat with people who know what I am going through because when I try to tell my family they seem to think I am making it up or they got it wrong or something.

[ACM]

Hi All! You can call me Nezzy I am a 28 year old female who lives in upstate NY with 3 kids 3 dogs and a husband. Here is my story sorry for the length

So a little over a year ago I started having what I called visions of random bugs and stuff in my room right before falling asleep. It happened about once a week or so and I really just thought nothing of it until about 6 months ago when they started happening every night and progressed into really frightening full blown hallucinations that made me jump out of bed and run out into the hall. So my first course of action was to talk to my cousin who is a therapist and she told me to start by mentioning it to my primary care Dr. Well he had no clue what I was having and diagnosed me with nightmares and tried to get me into a sleep study but it was a long hard road because my insurance wont cover sleep studies unless medically necessary and since his only diagnosis was nightmares they denied me 2 times. Finally I told him to put down that my father has sleep apnea and my husband said I snore and stop breathing when I sleep and that got me approved and by the next week I had my intial appointment with the sleep specialist. He also prescribed me ambien in the mean time until I could get some answers...the ambien always works against my hallucinations but I did not want to get addicted so I only took it on nights where I needed to sleep well.

After I told her everything that I was experiencing she told me they want to test me for narcolepsy and I was so confused. I told her that I think I would know if I fell asleep in the middle of daily activities or passed out when I was driving or something. She explained to me that those are really the made for tv versions of narcolepsy and the major symptom is EDS which I have but I have always shrugged it off as being a busy mom, and when I mentioned it to other people they said life is hard and everyone is tired so I should just deal. So she sent me home with a pamphlet and a appointment for the 2 sleep tests. While researching N I realized I could think back to a time where I have felt week when I get really mad or when I laugh to hard also I always zone out in certain situations but I am not sure if that has anything to do with it.

Anyways the sleep study came and went (on my birthday I might add) and I ran out of ambien but I didn't ask for anymore now that I might be getting some answers. So friday was my results appointment and she said that even though my polysomny was normal (I slept really well that night basically) my MSLT was very telling. She said I fells asleep during every nap with in 4 minutes and even entered REM sleep on the last nap with in 6 minutes. Here is the excerpt from the paper result paper I received:

"Ms. "Nezzy's" daytime MSLT demostrated a moderate to severe degree of hypersomnia with a mean sleep onset of 5.4 minutes. She fell asleep quickly during all five nap sessions and progressed into REM sleep during on of the naps (#5) Her nocturnal study was normal, with a total sleep time of 6.5 hours. This degree of hypersomnia and a nap containing REM intrusion should raise the diagnostic suspicion of narcolepsy, especially in a patient with prominent hypnagogic hallucinations reported in her clinical history. "

So Ok I finally have some answers but now I am overwhelmed with all of the treatments I might have to endure until I find the ones that work for me. I can't take novigal (sp?) because of the birth control I am on so she started me on a low form of Ritalin controlled release. She also gave me some information on Xyrem and told me to call her if it seems like something I might want to try for the "sleep" part. Reading all of these boards have gotten me worried about all the medications I might to be on to live a normal life and I am worried about side effects and addictions.

So there is my story. Reassurance from someone who has had this for awhile would be nice but I really just want to chat with people who know what I am going through because when I try to tell my family they seem to think I am making it up or they got it wrong or something.

Hello,

This is a very overwelming thing to deal with. I was diagnosed about a month ago. I am 33 and have ALWAYS been tired. When i was 17 my best friend had a brain mass that required major surgery when i got to see her in the ICU as soon as i walked in i dropped to the floor. Then it all started I had lots of episodes of blacking out/fainting the Drs all said it was just stress i was fine. I have been working for a Sleep specialist and he has been telling me for 2 years that I had N. Just from seeing me deal with work daily. I kept putting it off and my husband would call it Lazy *BEEP* Itis i would joke that i had Chronic Fatigue. Finally i decided to do the MSLT and appease the DR. Well I went into REM all 4 naps within 8 minutes. I have started the Nuvigil almost 3 weeks ago and am miserable with Nausea,headaches and lightheadedness. I am frustrated as to this and not sure if worth taking meds or just going back to dealing with life. This is a great site for support. I think people don't understand how we really feel everyday and so cause this is not an illness that is easily seen people think we exaggerate how we are feeling.

[Nezzy]

Thank you for the reply! As I stated in my OP I am starting with Ritalin 10mg controlled release and so far no side effects which is good but she only wants me to take it one time in the morning and by the time it wears off at about 5pm I get very tired and I can take a 2 hour nap. I am not sure about everyone else but 5pm is not a good time for me to be falling asleep I need to be alert for at least another 4 hours so I guess when I go back in a month we will talk about it. My Dr did mention going to provigil when I decide if I want to get permanent birth control but from what I am seeing on this board there are a lot of unpleasant side effects and I am happy to stick with the ritalin, she also mentioned moving me to adderal if the Ritalin doesn't work enough.

It is a lot to take in and so many meds to consider I feel like my mother in law who is on 15 different types of meds (shes older and has back problems) but its not fun when I think about being "drugged" up for the rest of my life.

[Contemplative]

Nezzy, Reassurance you ask for, Reassurance I send to you. From someone whose been there, bug hallucinations and all (at a later date I'll tell you the jailbird hallucination to this day I still swear is real), your symptoms, your feeling of being overwhelmed, your questions are all very real. Had my first, "Oh my goodness, I am actually going to die because I'm so physically tired moment in 1993, idiopathic hypersomnia in 1997, narcolepsy in 2003 and then rediagnosed in 2010 with an average sleep latency on the MSLT of 3.2 minutes and SOREM (Sleep Onset Rem Periods) on 4/4 naps" and let's not forget to combine it with Bipolar I, and PTSD, Fibromyalgia, etc, etc.


No this is not about me. It is however about me validated you. 3 kids. 3 dogs. AND a husband AND narcolepsy. My word of advice and reassurance is : "baby yourself" It's stressful times like these dealing with diagnoses and important medication choices that I'd suggest taking a deep breath, bubble bath, and a long distance hug. The hypnagogic ( wake to sleep) and hypnopompic (sleep to wake) can be very, very frightening. And wanting to deny the problem for fear of facing it, as did I, only prolonged my agony. I am doing much better after I literally mourned the years of suffering I endured, I practice gratitude as my religion for every little detail. If it's any help, I am having no side effects from Provigil, Focalin (which is an isomer of Ritalin), or Xyrem though I've been on quite a cocktail and we each respond differently. Our situations may be different yet we are all in this together. I am back to work part-time, being more social, and mostly have more hope. Hopefully imparted some hope for you. All the best and nothing but!


Take good care and use all the support available to you.

C.

[Nezzy]

C

Thank you for your reply. I am so stressed out right now. I thought that by having a name for it I could get on with my life and treat it as necessary but I feel so helpless. Its almost like the Dx has brought it to life and I feel like things are so out of my control right now. I tried to talk to my kids about it and explain that I when I fall asleep on the couch after work its not because I am trying to be lazy or not spend time with them but because my 8 hour extended release pill has worn off and nothing is keeping me awake. I feel like they are going to be affecting by this in a way as well and thats what makes me really sad because I know what it is like to have a mom who just lays there and does nothing (only mine was a drunk and couldn't get out of bed because of massive hangovers). My husband is very supportive but I wonder how long it will take for him to get annoyed with telling the kids "mommy needs to sleep leave her be" and how about the "sorry I can't sleep with you tonight hunny I might have a hallucination and kick you out of bed before screaming and running out into the hall".

I actually have no history of anxiety or depression or any other emotional/ psychological problem so I thought I could handle this Dx much more then I am right now. The funny thing is is that I think I have it way better then some because my cataplexy is very mild and I am able to fight my EDS (for the most part) so I should be thankful that I only have a small degree of the disorder right? I think I am just frustrated by a lot of things right now for instance my mother has no interest in this chronic disorder that her child has and is more interested in what they prescribed me. You see she went from being a drunk (sober for 18 years now) to being addicted to pain killer and now adderal. SO now I get to hide my stuff in my own home from my own mother while not getting any support from her either. Lovely isn't it?

Sigh ok I need to get the kids on the bus then get to work perhaps I'll right more later it does seem to be a bit therapeutic.

[ACM]

C

Thank you for your reply. I am so stressed out right now. I thought that by having a name for it I could get on with my life and treat it as necessary but I feel so helpless. Its almost like the Dx has brought it to life and I feel like things are so out of my control right now. I tried to talk to my kids about it and explain that I when I fall asleep on the couch after work its not because I am trying to be lazy or not spend time with them but because my 8 hour extended release pill has worn off and nothing is keeping me awake. I feel like they are going to be affecting by this in a way as well and thats what makes me really sad because I know what it is like to have a mom who just lays there and does nothing (only mine was a drunk and couldn't get out of bed because of massive hangovers). My husband is very supportive but I wonder how long it will take for him to get annoyed with telling the kids "mommy needs to sleep leave her be" and how about the "sorry I can't sleep with you tonight hunny I might have a hallucination and kick you out of bed before screaming and running out into the hall".

I actually have no history of anxiety or depression or any other emotional/ psychological problem so I thought I could handle this Dx much more then I am right now. The funny thing is is that I think I have it way better then some because my cataplexy is very mild and I am able to fight my EDS (for the most part) so I should be thankful that I only have a small degree of the disorder right? I think I am just frustrated by a lot of things right now for instance my mother has no interest in this chronic disorder that her child has and is more interested in what they prescribed me. You see she went from being a drunk (sober for 18 years now) to being addicted to pain killer and now adderal. SO now I get to hide my stuff in my own home from my own mother while not getting any support from her either. Lovely isn't it?

Sigh ok I need to get the kids on the bus then get to work perhaps I'll right more later it does seem to be a bit therapeutic.

I thought the same thing having a name for the issues would help. This has been so rough. I do think that children understand more then we think and as long as you are open with them they will understand. I do not have Cataplexy but the EDS is out of control. I have been taking Nuvigil for 3 weeks and think i am going nuts. I can not concentrate at all and am very emotional. This website has been very helpful and makes you feel not so alone... Hang in there....